Thursday, September 18, 2014

We decided to clean out Noah's closet over the weekend. It was a task
I'd had been putting off for a long while. Noah's closet isn't like a
typical child's. In it contains pieces of small therapy equipment, his
hope chest which I've filled with so many things since his birth,
adaptive switches, therapy games, speech devices, splints, orthotics,
and miscellaneous handicapped accessories that I'd often like to pretend
don't exist. His clothes always pushed to the front to camouflage
what all really rests in that closet. But nudges from Chris to purge
items that Noah has simply outgrown to make way for the new rather
forced me into closet exploration.

Most
parents have locks of hair and baby books with first memories. And
while I have those things too, my sentimental baby memories come in
forms of a first arm brace, a belly band and thumb splints so small
they'd fit a three month old. I can't rid of them, stashed in a box
they stay. They held such promise for me once upon a time. Well
meaning therapists handing these things out like water with the
assurance that with a little work and effort they'd fix every problem
Noah would ever have. While I've been able to part with lots of other
assistive devices that Noah has outgrown there is something about the
first anything that your child used that makes you cling to all those
precious baby moments, even if those moments were so very different from
what parents usually experience.

Then I came upon a special
envelope from another mother. It was how I stored two tiny Benik hand
splints that were sent to Noah. They belonged to a little boy named
Brayden who passed away suddenly in the fall of 2012. The loss of
Brayden was and still is very hard for me to think about. Knowing a
mother's heart aches each and every single second of the day. When
Brayden's mother learned Noah was having difficulties turning his thumbs
inward again and getting his hands stuck in a fisted position, she sent
me Brayden's hand splints knowing that insurance likely wouldn't help
me for many months, if at all. She gave me the biggest gift. You
might think we'll they are just hand splints, but they are not -
obviously if I'm still clinging to Noah's first thumb splints as a
baby. She sent me a piece of helping hands. She selflessly sent them
to me, without hesitation or pause.

Noah used them for about a
year, before he outgrew them. And in that time Noah fully learned to
flex his hand open on a regular basis. Not only did Noah learn that
skill but he's learned to turn pages in books with both thumbs.
Something that is often evident with his paper cuts on both thumbs. And
every time I placed those little green braces on Noah's hands, I said a
prayer to a little boy that I begged to hear me in heaven. To look
after Noah - to look after him and bless him with love and help. I'd
like to believe Brayden heard all those pleas for help because Noah's
hands have made such tremendous progress.

Brayden's mom never
knew if she'd see them again when she sent them to me, we never really
discussed it. She simply sent them to me because Noah needed help. But
it's time they find another set of hands to heal, and have that mom be
able to touch a piece of a memory of her child once again. There was no
question what I was supposed to do when I held them in my hands after
they came out of the closet. It was as if a tiny voice spoke to me, and
said, "I'm ready to go home." I couldn't part with them any other
way.

Brayden's mom is the founder of The Global Hydranencephaly Foundation. Her hopes are
to start a lending library where pieces of therapy devices that
assisted our children along the way with be shared with each other. It
is such a beautiful idea that so many children stand to benefit from.
After all sometimes at the end of the day when the system fails us,
government services aren't there to help, insurance declines our
child's needs... another special needs parent reaching their hand out in
the dark is sometimes the only place you have to turn to.

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Noah

Noah Mitchell Warden was born December 23, 2008, weighing 9lbs and 1oz by emergency c-section at 8:51am. Noah did not breathe or have a heartbeat for the first 13 minutes of his life. He was taken to Children's Hospital in order to have a procedure done known as brain cooling in attempts to minimize damage caused by perinatal asphyxia. Noah's brain cooled for 72 hours after which time the hospital ran an MRI and an EEG to determine the extent of the damage. Unfortunately, the results came back with devastating news. Noah had suffered "global damage" to his brain. As a result the prognosis was grim. They said Noah would mostly likely never walk, talk, eat or even breathe on his own. Today, Noah has the diagnosis of hypoxic-ischemic encephalopathy resulting in spastic quadriplegia cerebral palsy with athetoid movements. Noah's miracle has brought our story to all of you.